Like many medical discoveries, Dr. Todd Tuttle says the mastectomy finding happened by chance.
"Several surgeons in the Twin Cities who treat women with breast cancer were really sitting around having coffee, and just made the observation that more and more women were requesting this operation," says Tuttle, chief of surgical oncology at the University of Minnesota Medical School and Cancer Center.
That coffee talk with some of his peers spurred him to investigate whether the mastectomy trend was real. Tuttle reviewed 150,000 patient records from the U.S. Cancer Registry. The database had been collecting information on double mastectomies since 1998.
Yet no one up to that point had looked at the data, says Tuttle.
"And what we found was that in a relatively short period of time, six years, the rate of bilateral mastectomy increased 150 percent in the United States," Tuttle says.
“I wanted to eliminate it. I wanted to get rid of it. I wanted to take away any chance it could have of coming back."Debra Elmore-Nesheim
That means about 10,000 women in the U.S. each year choose to remove both breasts even though they only have cancer in one breast.
The number surprises Tuttle. But it also seems to support what he has been hearing informally from his newly diagnosed patients.
"The most common reason that I hear for this operation is, 'I just want to be done with it. I don't ever want to have a mammogram again, or have to have a biopsy or to be told that I have breast cancer again,'" Tuttle says.
The evidence doesn't show that having a double mastectomy improves a patient's chance of survival, Tuttle says.
"It's very clear that there are no convincing data that removing the opposite, normal breast will at all impact their survival rate from breast cancer," says Tuttle. "I think some women may have that misconception, or maybe be told that from other doctors, that somehow taking off both breasts is going to improve their outcome."
Tuttle suspects bad advice, because he's seen it with his own patients. For example, a few weeks ago he detected a very small breast cancer in a young woman, who he says was an excellent candidate for a lumpectomy, a procedure where just the diseased breast tissue is removed, rather than the entire breast. Tuttle says the patient agreed to the lumpectomy and even scheduled the procedure.
Then she consulted with her family doctor, who does not specialize in treating breast cancer.
"And the family physician told her, 'I'm just not real comfortable with you having a lumpectomy. I think you should have a mastectomy. I think it'll increase the chance that you'll be here five years from now.' And that was it," says Tuttle. "That's all she had to hear. It wasn't true information or accurate information. But that's all she had to hear. And she now wants to have bilateral mastectomies."
The fear associated with a breast cancer diagnosis can be tremendous. Last December Debra Elmore-Nesheim, 43, was diagnosed with an early stage cancer in one of her breasts. Her cancer was so small she had many treatment options. Still, she opted for the most aggressive option, a double mastectomy.
"I wanted to eliminate it. I wanted to get rid of it," says Elmore-Nesheim. "I wanted to take away any chance it could have of coming back. I wanted to do the most that I could to make sure that it didn't return."
Elmore-Nesheim says she based her decision on a couple of factors. She was diagnosed with her cancer at a relatively young age, which often means the cancer can be more aggressive. And her family has a history of cancer, but not breast cancer.
"That, on top of the emotional, did outweigh the evidence that what I did wasn't significantly going to improve my chances of the cancer not coming back," says Elmore-Nesheim. "But I don't know. It was just the right decision for me and I'm very glad that I did it."
She also wanted her breasts to have the same symmetry after the operation. She said plastic surgery has improved so much in recent years she felt she would have a better result by removing both breasts, although she says that was really a secondary part of her decision to have a double mastectomy.
Dr. Tuttle agrees that breast reconstruction technology has improved dramatically, and he says he's not worried about women who chose a double mastectomy for these reasons. He says it's also legitimate to choose the procedure in cases where a woman has a genetic mutation that predisposes her to a much higher risk of breast cancer.
"If, however, patients are being given inaccurate information -- they're being told their chances of seeing their kids graduate from high school is going to be better if they have both breasts taken off -- then that would be a tragedy," says Tuttle. "That dissemination of inaccurate information could lead to over-treatment of breast cancer."
Tuttle's research will continue with interviews with patients and surgeons to further nail down why the rate of double mastectomies is increasing. He says specifically he's interested to find out if a surgeon's age or gender plays any role in whether or not women choose to have the procedure.
He is also looking at whether the increased use of magnetic resonance imaging machines is contributing to the double mastectomy trend. MRIs often reveal non-cancerous breast abnormalities.
Dr. Tuttle suspects that patients who learn about those abnormalities may more likely to have their breasts removed because they are tired of dealing with abnormal test results.
Tuttle's study is published in the latest edition of the Journal of Clinical Oncology.